Wednesday, October 22, 2014

Shunt revision rescheduled

It's hard to believe I am writing this and although I tend not to believe in bad luck perhaps the other week I jinxed myself when I wrote something to the effect of: "Dr.Bragg is out of the office studying for her final board testing but said she didn't have a problem doing the VP Shunt surgery while out".
Perhaps I jinxed it by doing yesterdays Pre-op Appt. (?) or perhaps I just feel like it's one of those things that oh so elusively out of reach (relief)?
I don't know but what I do know is that this sucks and honestly I'm probably going to worry between now and the new surgery date (Nov 20th) that Dr.Bragg will change her mind or doesn't believe me or something. Maybe it's an irrational fear but non-the-less when you don't really know it is for me a fear.

Perhaps that all sounds silly but when you've had the past experiences I have with Neurosurgeons I don't think you ever quite stop worrying when will this one stop believing and leave to? Silly I hope but non-the-less a worry of mine.
When I saw the missed call from my Nrsgns Secretary earlier I think my heart just momentarily stopped, I just had a funny feeling it wasn't going to be a good reason. I called the Secretary back and sure enough Dr.Bragg wanted/needed to reschedule surgery from the 30th (next wk) to later in Nov.
I had thought the reason surgery was delayed this 2 wks now was due to her taking her board testing sometime in this interval (but thinking about it now remember her saying something about it being in Nov.) and so I am not sure but think she was just doing very part time practice between when I saw her a few wks ago and now and then next week will be out for good? I don't really know.

After talking to her Secretary, Anna went back and talked to Dr.Bragg who was willing to con't on with the surgery next Thurs. but all f/up care would have been with her partner. Anyone whose been following this or my previous cb site for sometime knows my experiences with her partner have not been great ranging from flat out accusing me of being a "drug seeker" to comments along the line "I'm glad she wound up with you" (when rounding on a wknd day for her); believe me there's a reason I walked out of the one and only appt with this dr.
The only appt. I've to date ever walked out of AND I feel it is my gain to have Dr.Bragg as my Nrsgn - she is good at what she does and I think works well with my other Providers. She has believed me when I know there are many times my symptoms are less than classically presenting and though I never stop really worrying about her giving up I feel lucky to have gotten her on my Team due to her caring and persistence.
I know her partner is a good Neurosurgeon and several of my friends have kids who see him and they really like him which I am happy they have good working relationships. I would never say this dr. is a bad person just that we don't mesh as Patient and Provider and I feel heads and toes more comfortable with Dr.Bragg who has never discounted my symptoms or what I might feel nor accused me of making up symptoms. I think some drs are (my opinion) just better with kids and some are just more able to do both kids and adults.
It's also on my part not a male vs female dr. thing as several of my other Specialists are male including my Cardiologist and we get along well. In my Cardiologists case we are 2 headstong, stubborn people who have worked well despite our not always agreeing nature.
I write all of this here as with many things I write a bit apprehensively as I don't obviously know who (or even what Providers) may read this and I worry a bit it may offend someone and that definitely isn't my intent.
The reason I share it is b/c it is my experience and this all above plays in to how I feel today as I was deciding whether to do surgery still next wk or as much as it kills me go with surgery in a month. =/ I am guessing Dr.Bragg's Secretary probably thought 'holy cow' when I talked to her as I was in tears and upset (not angry upset, just upset) trying to sort out what to do.

Due to Dr.Bragg being there I've opted to reschedule surgery to the date later in Nov., I think it may be a long 4 wks between now and that surgery date but I am not very comfortable with post-op being under someone other than Dr.Bragg who is familiar with my care.
I bounced the thought off my Mom (who acutely remembers past experiences) and some friends and just decided since Dr.Bragg is so familiar with my underlying, potentially complicating issues i'll wait. Do I wish it was tomorrow or the as before scheduled next Thurs yet? Absolutely!
Pre-Op from yesterday should still carry over to next month so the only thing I can think of is INR testing which I imagine i'll have to get done the day before. Anna, the Secretary was going to place the surgery as the "1st case" so hopefully that will remain true and we manage INR the day before by outside testing.
To sign off I'll leave with this quote I came across on fb today:
"Hiding sick is very easy when your life is always being invaded by pain"
I wish more people could understand this; not all of us regardless of how we feel curl up on the couch as we have things we are responsible to and so you instead modify your life or plans.

Tuesday, October 21, 2014

Pre-op Appt, VP Shunt Surgery Thurs. 10/30

Today's pre-op Appt went well, nothing to special. The Appt was with my actual PMD(she's very part time but her nurses will add me on to her schedule) so went relatively quickly. We where able to use labs we'd just done several weeks ago so not much had to be done.
EKG was done at my Cardiology Appt last wk so that to did not have to be done. As far as the cardiac symptoms/breathing issues she just commented she'd have wanted a Cardiology consult had I not just seen them (she sent me) and so she was glad we didn't have to try to get that done in time.
Med wise unless Cardiology says otherwise (PMD was going to call them after the appt.) and unless Dr.Bragg/her office would say otherwise before next Thurs's surgery i'll stop Coumadin which is the blood thinner 3 days ahead of surgery. Med wise i'll take Lasix and all cardiac meds the morning of surgery (to prevent heart-fluid overload) though she wasn't certain about the baby aspirin. She feels it should be taken but is Cardiology's call.
In the past as far as knowing if the blood thinner was in-range for the day of surgery Dr.Bragg has done several different approaches from my being admitted to the floor the day before surgery to having me come early the day of surgery and doing labs several hours before at her hospital. The plan this time is admit the day of surgery and I assume just check INR in the 2 hr window between surgery check in and going back to the OR. I assume if they want something different they'll decide between now and then.
Weds. i'll be in Milw. and since it's just easier i'll have my Infusion nurse access my Port (vs leaving it accessed after Monday's infusion and then having to change the dressing when I shower each day leading up to Thurs.) so that is done and no need to convince Anesthesia or a Nurse to access it vs. starting a peripheral. My infusion Nurses real jobs are on the Access Team at Children's so it works out well; typically they will just add me to their schedule, i'll come in and takes about 15-20mins. Having the Port accessed before I come in saves a lot of frustration the day of surgery as Anesthesia usually is against accessing/using the Port and honestly even this way sometimes they only way they'll use it is if Dr.Bragg asks them (she has seen multiple attempts at peripheral IVs).
As far as ERT since surgery is on a Thurs., I may be out in time to get my normal infusion at CHW but per an agreement/arrangement with UW's D6-4 Neurosurgery Pharmacy I call and give them a heads up anytime i'll be having surgery so they can order the enzyme drug to have on hand. This way if I am in-pt I can won't miss. I've not yet called to let them know but the Aldurazyme then gets mixed by the Pharmacy and infused by the floor Nurse(s) using a slightly different ramp up rate than we use at CHW (for whatever reason it runs at a much faster pace if we use the ramp up rate I normally at at CHW so one of the Nurses had re-calculated their rate and works well).
As far as surgery I am just praying we figure this out, that any occlusion would be a simple find/fix and if need be Dr.Bragg works down the entire shunt system to rule out it isn't further down in the distal end. I trust her though and know she'll do whatever she feels is best.
I guess if there's anything else i'll update otherwise surgery is next Thurs. the 30th.
I've attached below a few copies of my Sun School kids at the end of class the past 2 wks. I typically take pics for various Church purposes and then make copies for the kids/their parents which the kids seem to really like having.
As difficult as mornings are these days (I feel quite out of sorts actually and in a zone sort of) I try to get up a bit earlier on Sundays so some of the symptoms are atleast partially worn off and honestly my kids are pretty easy going. I've also figured out how to teach without having to do a ton of actual talking the entire time.
In any case thanks for stopping by,
'The Passover'

'Moses leads the Israelites'